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Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci

Hello,

I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

Comments: 7

Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

Comments: 2

Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

Comments: 10

Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

Comments: 1

Partial Vestibulectomy

Mon Jul 31, 2017 6:44 pm by JGD13

Hi all i am new here.
I had a partial vestibulectomy 21/7 for my provoked vulvodynia.
After a painful few days and feeling quite uncomfortable it seemed to get better. 1 week after i noticed some white stuff and gloopy discharge, it wasnt smelly or itchy but i got a check up at the gp surgery and the doctor said the stitches looked fine and i could just have a touch of thrush. He said this is …

Comments: 6

Post Vestibulectomy

Thu Aug 03, 2017 6:15 pm by infinitelywondering

Heya,

I had my vestibulectomy (full) about a day and a half ago. I was very sick and poorly just after the op and experienced intense pain down there Sad

However, today I came home and have done the following things:

-washed with warm water
-applied manuka honey to the area
-ensured I wash at least 3 times a day and dab the area dry gently
-use frozen peas to stop the swelling

As of now I am …

Comments: 1

New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

Comments: 3

Anyone from the PNW?

Sat Aug 05, 2017 7:54 am by jungleclover

I'm located near Portland and I would be really cool to actually meet someone with this issue. I think my roommate in college technically had this problem. She had an overgrown hymen removed and can't deal with penetration as a result. But she is gay so it seems like it hasn't been a huge problem for her (although we didn't talk about it much so there was possibly more to it than she let on). …

Comments: 0

Constant pain, I want to die.

Fri Jun 02, 2017 4:29 am by Meggiemay

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

Comments: 22


Hi, I'm new (from the UK)

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Hi, I'm new (from the UK)

Post  Dina on Fri Jun 17, 2011 7:06 pm

Hi everybody!

Great to see that there is a support forum for this! I'm pretty sure that I have vulvodynia, but still waiting for my GP to bother giving me a diagnosis. This all started after I had my first child back in 2007. Very soon after I noticed a horrible burning/stinging feeling upon penetration and it was the same every time. After over a year I went to see my GP who said I probably had a nerve problem where my stiches had been. He gave me gabapentin and referred me to the gyno at the hospital. The gabapentin started working straight away and I was soon painfree, and by the time I finally got my appointment at the hospital there was no pain for them to assess.
I stopped taking gabapentin a few months before I got pregnant again and never felt the pain again. But then a few weeks after I had my second child I noticed strong discomfort on touch, particulary in the area around my clitoris or urethra (if I can manage to climax I don't get a wave of pleasure, I get a sharp, deep shooting pain all the way down my thighs). It was only upon contact at first and I didn't really feel up for sex anyway because of my baby blues, but then suddenly it got much worse. I started getting so much pain that it was sometimes difficult to walk, or sit and my trousers were getting to tight to wear. I also had periods of little or no pain unless there is direct contact. I already have an existing issue with my bladder (long story short, my GP messed up my meds for a UTI and I ended up with an overly sensitiv bladder so I constantly feel full and have to use the toilet at least 20 times a day) so my first thought was that this was something relating to that. I get UTIs at least 4 times a year so I went to my GP and got some antibiotics but it didn't improve.

So after 4 appointments with my GP I've now had another appointment with gyno but the seriously stressed gyno I saw didn't have time to listen and thought that all my problems (I also had a seriously heavy and irregular period) would be solved by removing my copper coil. Well, the coil has been out for well over a week and I still feel this constant throbbing pain.
I have an appointment with my GP on Wednesday and could really do with some help in regards to how I can get a diagnosis. My GP doesn't seem familiar with this (the GP that gave me the gabapentin left the clinic so I can no longer see him).

Dina

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Re: Hi, I'm new (from the UK)

Post  noni on Fri Jun 17, 2011 9:07 pm

Get a refferal to a VULVAR CLINIC or PELVIC PAIN SPECIALIST.

or to a PAIN CLINIC.

Goodluck !!! Smile
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Re: Hi, I'm new (from the UK)

Post  Aussie on Sat Jun 18, 2011 12:04 pm

hi there,

it sounds like you have been suffering with ic for a while now. look into the diet. It may help with frequency also have ic. As for vulvodynia, a women's health physio is better than any one to assess tension in pelvic floor which will be contributing to pain. Gynos i found have been les experienced with these issues. Will write more on monday , too hard on my phone.

Claire x


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Re: Hi, I'm new (from the UK)

Post  Sarah001 on Sat Jun 18, 2011 12:52 pm

Hi and welcome. Aussie is right a Women's Health Physio is where you need to be to have the pelvic floor checked out, only being hooked up to a machine with a vaginal sensor in place will give you precise readings and information about what needs doing. V can be caused by tight muscles, weak muscles or tight and weak muscles so it can vary from woman to woman. Strangely I have a friend with burning mouth syndrome and she was also told the coil she had in place could be behind that, I don't know how exactly but it was something she recently discussed with me.
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Re: Hi, I'm new (from the UK)

Post  Dina on Sat Jun 18, 2011 6:07 pm

Do they have these clinics in the UK? I have been referred to physio at the hospital before do learn pelvic floor exercises for my bladder, but that was years ago though.

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Re: Hi, I'm new (from the UK)

Post  Aussie on Mon Jun 20, 2011 3:18 am

They will have clinics in the UK for sure. Ask Sarah on that one, but any women’s health physio should be able to give you some guidance, it is just finding the right one that is willing to work with you, getting those trigger points to settle and stay settled down.

Have you tried the IC diet? www.icnetwork.com

Some times 'kegles" prescribed to help frequency can make the condition worse and in some cases better, so an assessment by a competant physio is essential, you don't want to do the exercises wrong.

If you gp can't give you a diagnosis - of 'vulva pain' (vulvodynia) - excellent diagnosis doc Smile - then change gp's. I had to go to 4 gp's then 2 gynos to get my 'you have vulva pain' diagnosis. Bloody idiots, not that it really matters, we already know what we have.

Anything else I can help with give me a shout, always happy to give advice. We are all in this together.

Claire


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Re: Hi, I'm new (from the UK)

Post  Sarah001 on Mon Jun 20, 2011 11:28 am

There are vulval clinics but they tend to have a huge waiting list, there's a list in the info section I think but it is exactly as Claire said you need a Women's Health Physio. WH Physios are available on the NHS if you can find one in your area but again have a waiting list because there aren't many but there are private ones who charge the same as normal physios. Mine was private and she charged £32 a session. They can test your pelvic floor to see how tight it is, whether you can relax it etc and give you a program to suit your own needs.
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Re: Hi, I'm new (from the UK)

Post  Sebby (Admin) on Mon Jun 20, 2011 6:03 pm


Welcome to the forum..yes there are Vulval clinics...see forum link below

http://www.vulvodyniasupportforum.com/t230-list-of-uk-vulval-clinics

Ask to be refered to the one nearest you


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Re: Hi, I'm new (from the UK)

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